Sixty days of wondering….and the importance of details.

When I began this blog journey, I promised that I would remain as real and as authentic as I could.  The past sixty days have been very real and while I won’t share every single detail, today is about sixty days of wondering and the importance of details.  Vague enough for you?

Ya’ll remember that blog post I did on the fun of a chemical stress test?  That’s where my sixty days begins-well, actually a couple weeks prior.  I had been dealing with these odd pains across my chest and they just didn’t get my strong message that I did not have time to deal with them or anything else that would upset my little apple cart routine.  Then, one afternoon, before the stress test, I had finally reached that line in the sand where I was just simply annoyed by them.  So, off to the doctor this wonderfully obedient patient went. (If you know me, you know that is oozing sarcasm.)  I’m sitting in the exam room laughing, making fun of my ailments when well….”Mrs. X, you need to head on over to the ER.  We are telling them you are on your way.”  Ok…now would be the time most people would at least have a moment of “uh-oh”…..but…..when you have lived with a health condition your entire life….it takes a WHOLE lot more than the word ER to get a pause!

As I continue this story, let me just say this….you go into an ER with “chest pain” anywhere around your name and it’s like watching the ER in fast forward.  I don’t get impressed with the medical world much anymore, but I did find the reaction and process to be very impressive.  So, EKG…normal.  Blood pressure…ok.  Let’s do some more tests…so off to another room where I got the full “ER” workup.  Now we can talk about my veins….I wasn’t asking for any pain meds (although I was asked many times), so I guess my request of a local before the IV did not seem extreme.  (See stress test blog for more details about my veins and IV’s….it’s a comic strip.)  Emergency cardiac event has been ruled out…now let’s see if it’s something lung oriented.  (Still joking around, making fun of my spouse who was “resting his eyes” as we waited for each test/event.)  X-RAY-clear.  Ok……for some odd reason, this is where Kim decides to pay a little more attention to what’s going on around her and ask a few questions.  (Remember, this whole day started because I was beyond annoyed at those pains that kept coming and I was still annoyed.)  So, out of nothing more than being annoyed that those pains just kept coming, I made the suggestion to the ER doc that “Hey, my IV is in….and I have RRP…..could we just go ahead and get a CT just to make sure nothing crazy (like papilloma) is going on?”  And this is where the “importance of details” begins to take hold in this story.  See, RRP is rare.  I cannot tell you how many doctors have no clue what it is or its process.  I’m talking about even doctors of high stature in their respective field not knowing what it is.  (More on that in a bit.)  After some resistance, she agreed and the CT was ordered.  During the CT, I should have known things were about to get real….as when the contrast was injected the cap came off the line!  Seriously…who does that happen to!!!  Blood is going everywhere!  I’m laughing.  I’m sure when I walked back to the ER room, those who saw me wondered if the attack of the Zombies had occurred and I would soon be coming after their brains for a snack.  I wish I could tell you while we waited for those results I prayed, read my Bible or something wise and Godly…..but I will be honest.  I was texting, checking Facebook, taking pics of my IV to send my sister who honestly had rather seen pics of the blood……I was done with this whole day and ready to leave and grab some dinner and just accept those annoying pains.  (Remember the word details….had I not been a patient who is well versed in my condition and all that comes along with it….I would have left after the chest X-RAY with a doctor saying well…maybe it’s reflux. Details matter…even the smallest ones.)

So….I’m being all “in the world” while I wait…….then my doctor walks in.  Not the ER doctor. If you know my doctor, you know joking around is kinda how it goes.  So, he walks in and the first thing I say is a comment about him having on a Razorback shirt…he is a huge OU fan!  We joke about that and his bright sneakers and such…and then the conversation just became fuzzy.  “Kim, there are two spots on your lungs, and it could be cancer.”  There ya go……. “But…go on vacation (we were leaving in two days-a big part of why I was so annoyed by this whole day…ain’t got time for this!) and when you get back lets get that stress test done and we will decide what is next on the nodules.”  (To be honest, after that “C” word…everything else was a blur.)

And now…sixty days of wondering……details……advocate……I sit here right now wondering do I type this as a story or just bullet point the circus of my sixty days…….because the point of this isn’t my story…but the importance of details…..hmm….maybe another cup of coffee will help me decide.

Let’s bullet the highlights and see where that takes us….

  • ER CT 2014-(no prior images available-details)
  • Follow-Up to ER CT-two weeks later due to vacation (I had my records with me.  If I had not, the doctor thought it was just one spot and that it was smaller than what CT indicated….details.)
  • One day later-Visit to same doctor above for what would be Strep throat. (Details.)
  • PET/CT scan-one week later
  • Call to GP two days later-still sick. (New ABX called in.  Details.)
  • Asked for referral to Pulmonary for following of nodules.(Details, I had to ask.)
  • Pulmonary Appointment-still no official radiology report (see below), so appointment was ran off my history and PET images. Due to PET images, biopsy of a node and two nodules was being recommended.  Due to my prior health, a clearance from ENT was required due to airway. (Details-no report available and remember that “no prior images” detail.)
  • PET/CT scan official radiology report-one week later (Details….new transcriptionist has delayed almost all results.)
  • PET/CT results day-I sit in the car as I open my copy of the results (doctor offices were to get their own copy via the exchange in place-details.)
  • Day after PET/CT results-Cannot have MRI, so a full breast ultrasound was performed.  Two spots confirmed.  Prior images reviewed.  Stable 24+ months.  Clear.  (Details-take care of your breast health-my diligence over caring for high density breasts prevented two unnecessary biopsies for PET activity.)
  • Following Friday-ENT visit.  Scope of airway in office.  (Such fun times..imagine a small snake being shoved down your airway while you are awake and told to relax….seriously…let’s trade seats here.)
    The scope.........

    The scope………

    No notation from prior appointments in this sixty days of waiting regarding illness.  Not cleared for biopsy methods presented. (Details… notation of prior illness…and remember that “no prior images”.)

  • Referral to Center for Chest Care at HOG.  (This is Friday-details….told I would hear Monday afternoon.)
  • Tuesday… call.  Called my GP.  (Referral had not taken place-details…last appointment at specialist on a Friday….details.)
  • And we are now at seven weeks post ER CT.  (Details-no prior images available, illnesses, RRP)
  • Eight weeks post ER CT-visit with Chest Clinic.

I think it’s time to come off bullets and get back to the story, because this is where details and diligence and being your own advocate in your healthcare really come into play.  Eight weeks have gone by with this chick wondering if she had cancer or not…..lung cancer to be exact.  A paratracheal node that lit up like a Christmas tree on the PET as well as the area around my trach site.  A Christmas tree going on in a few areas…..btw..bright yellow is NOT a good thing on a PET…..and even more frustrating is that on a PET, infection, inflammation and cancer all can light up the same!

So, I’m at the Center for Chest Care…the place I was assured would come up with the plan of action and bring this circus (yes, that’s what I was calling it by this point) into some type of controlled situation.  You meet with a Cardio-Thoracic surgeon and then that night, your entire case file (with images and reports) is reviewed by an eight person committee at HOG to determine plan of action.

I showed up prepared.  I had all my radiology reports, CD’s of all my scans….and….remember that “no prior images” all the way back up at the ER CT?????  Well……that wasn’t true.  There was a prior CT available…just NO one…not one single doctor or radiologist had viewed it.  Kim, little ole me, just happened to remember it one day at the house and called and got the report/images.  So, I had this with me on this date.  Oh and remember the strep throat and second course of abx??? Yes…not in any of the medical reports either.  Details…’s all in the details….(Oh…and remember my little comment above about doctors not knowing about RRP….clueless…simply clueless.)

So, this doctor is telling me what he thinks, his ideas of what will happen in committee and I ask him if he had the “no prior images” scan that I had with me.  “No, but don’t worry, we can pull it up tonight….” And he jots down NW-2011 scan. I ask if he knew of the infections taking place a week prior to ER CT or that I was ill during PET but did not know it yet.  “No.”  Details.

So, I leave with confidence that in a day or two I would have a clear plan of action given to me by a well informed committee.

The call comes.  “You can’t have surgery here.  It needs to be biopsied.”  What needs to be biopsied?  The nodules, both/one, the lymph node?  I’m confused.  I already knew that before I went to clinic and into committee.  “We think you should go back to the needle biopsy process.”  Wait..what?  I wasn’t cleared for that already by ENT.  ENT also didn’t clear me for any biopsy procedure other than a VATS.  Wait…I’m so confused.

Ok, folks, this is where Kim is probably not shining her light very bright….but by this point…I’m so annoyed and angry that well… husband knows when it comes to my medical care..when I reach this point…just step aside.

And I am wondering if true....

And I am wondering if true….

I call pulmonary office ready to pull teeth…..I pop a message to my GP (ya know…the doctor that this journey began with at the ER)….and then I learn NOT ONE DOCTOR has yet to view the prior scan that I have been asking about for two weeks…NOT ONE….the committee did not view it either after I specifically brought it up and the doctor said he didn’t need my copy.  Pulmonary agreed that the needle biopsy was off the table and that if a biopsy occurred, it had to be under general (VATS).  It can’t be done locally…would have to be done by a children’s group due to my child size airway.  I told pulmonary, I will drive these records down to you today.  I did.  While down there, I just had to hear why that “famed” committee accomplished no more than we had already accomplished over the prior seven weeks.  (See above where I learned the prior scan was not viewed.)

And now…it’s viewed.  Pulmonary views prior scans and compares to current imaging.  Committee is looking at my file again this week.  (Ya know…now that they have everything…even though they could have had it the first time had the doctor just taken it from me.)

So…back to all those details….that one prior CT, the infections taking place around the time of the PET scan…..

And we are at today….well…we still have committee tomorrow night…but there’s some confidence in where we are today…all because of those details…details that not one single doctor would have put together without my diligence as a patient to my own healthcare.  (More on this in a bit.)

That node that had some folks running in circles…that node that lit up like the bright northern star….seems no one realized it was calcified…and had been.  Given the acute illness during scans, that’s why it likely lit up.  The activity around my trach…..I coughed nonstop during PET resting period and had just finished course of abx for strep……that’s probably why it lit up like all of NYC.  The two lung nodules that are of a size that is concerning… has been stable since that prior scan.  One radiologist even said what it was…and now that the pulmonary doctor has seen prior scan….agrees.  One biopsy removed from the plan.

So today, due to that prior scan finally being seen and my constant “word vomit” about infections…..I’m going to committee again tomorrow and they should agree with the current course of action on the table.  I’m super close to that magic three month rescan date that will help show if the growth rate of the nodule in question is a current growing pattern or a pattern that has been stable, or at least at a benign growth rate.  I still have a biopsy coming, but it’s not today.  It can’t be local, so we have to begin working on those referrals so we can get it done.

So, this is my lung cancer scare.(Lung cancer is the leading cause of cancer related deaths. It’s not just a smoker’s disease.)  It’s not totally over (still have that one in the upper lobe that isn’t behaving), but it looks so much better than it did just ten days ago.  I tell my story mostly to show how IMPORTANT it is to take charge of your healthcare.  Doctors are not omnipotent.  You cannot assume your records get from point a to point b.  Take notes, keep a notebook, get copies of everything (STAY OFF OF GOOGLE)…..get copies but do not use them to have a Google fest…you will be convinced you have some rare jungle disease…’s ok to challenge a doctor or nurse to get the care you should get.  It’s ok to question what’s taking place.  Now, don’t go be all “Jerk Patient”….but do be in charge of your own path.

I’ve lost confidence in my current healthcare here.  One hand doesn’t know what the other hand is doing and that’s concerning.  Electronic health records were put in place to start plugging these holes…but I’ve learned it’s not a fail-proof system.  (Remember that “no prior imaging”….seems I had two medical record numbers with a healthcare system.)

I think of my RRP journey and how far we have come as a community with that disease….all because patients became their own advocates.  Parents, patients, a small group of medical professionals….

Ask questions.  Watch the details.  Follow-up.

A 2012 article in the Annals of Family Medicine noted that the average primary-care physician has about 2,300 patients on his “panel”— that is, the total under his or her care. Worse, it said that each physician would have to “spend 21.7 hours per day to provide all recommended acute, chronic and preventive care for a panel of 2,500 patients.”

That above, is just a GP/PC stat.  The stat load for other areas of practice are just as staggering.  Our system is on overload…and with the cuts in payments to doctors from insurance providers….the pressure is on to see more patients in less time.  It’s unrealistic to expect any doctor to remember the “details” of your case….that’s now our job.

So, peace out for today…and MERRY CHRISTMAS!!!!!

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